The new Alzheimer’s drug has given me my life back
Mike Colley: ' I don't hide the fact that I have Alzheimer's' - Heathcliff O'Malley
Initially, it was simple forgetfulness, not being able to recall names of people or certain objects, but then driving anywhere became a nightmare. I was getting totally lost even going to places I’ve been driving to for 40 years. I also found myself becoming very confused about who I was, and what I was doing which was quite frightening. I’d be in the room with other people, but I wouldn’t be entirely present.
I’ve been retired for about 15 years after an active life running various businesses from the travel sector to garden centres. I was doing ok health-wise and thought I’d managed well during Covid, as horrendous as it was, but in the summer of 2021, I began to realise that things weren’t quite right.
My family and friends were starting to become more and more concerned. But rather than going to the GP, my neighbour encouraged me to contact a company called Re:Cognition Health who were running clinical trials for Alzheimer’s. Their doctors diagnosed me with the disease, and I was enrolled on a study testing donanemab, a new drug which clears the disease-causing plaques from the brain. Being part of this trial required getting an MRI scan of my brain to see what was going on up there, and then travelling up to London for infusions, which I’ve been receiving every four weeks since September 2021.
I’ve since noticed steady improvements over the last two years. It seemed like I was getting more articulate with every treatment. Nothing drastic, I didn’t suddenly turn into Einstein, but I began feeling more confident conversing with people and driving again.
It’s not just the treatment, I’m also taking other steps to try and help my brain health. In my younger years, I was quite a good drinker, but I don’t drink alcohol anymore. I swim six days a week, with Sundays off, and most mornings I’m in the pool at 5am doing 40 minutes nonstop. I do some weights as well. Although I’m divorced I don’t live on my own. I’ve got a place in a retirement village in Kent called Wildernesse House. It’s good for me because I’m able to play ping pong with my next-door neighbour each day and eat out at restaurants and go to the theatre.
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I know Alzheimer’s is progressive and the condition deteriorates over time, but I’m keen to be around as long as possible for my grandchildren. One of my two sons tragically passed away and his children have shown real strength in dealing with that. I’m doing my best to be there for them, we speak regularly and on the anniversary of his passing, we always meet up for a meal and a long talk.
It’s been pretty incredible feeling the improvement over the last two years. I feel like I’ve been given my life back. It’s a little scary when you get to 81, but I don’t feel it, I don’t think I look it, and I certainly don’t act like it. On my 80th birthday last year, I threw a big party with 60 people, and I really pushed the boat out. I even got up and gave them all a rendition of Sinatra’s My Way.
Another major thing that I’ve been able to achieve since I’ve been on this drug is finding out so much more about my family.
For most of my adult life, I knew that my mother had married and divorced before I was born. I knew she’d had a fling with another man, my father, but to her dying day, she would never talk about it or tell me who he was, and he never tried to make contact with me.
I’d long resigned myself that I would never find out the truth. But recently, with the help of a DNA testing service, I’ve been able to track him down – sort of. Sadly, he’s long dead so I won’t be getting to talk to him anytime soon. But I have some photographs of him, and I’ve discovered that I have several half-siblings which was quite a shock! I’ve suddenly gained about 20 new family members who I never even knew existed, and I’ll soon be making a trip up north to meet them which is incredibly exciting. It makes such a difference knowing I have a whole new family to get to know and none of this would have been possible if my brain health had continued deteriorating.
I’m so much more optimistic about my future now. I don’t hide the fact that I have Alzheimer’s. In fact I’m quite open with anybody that I have it. If I’m having a conversation and I forget words or names, I tell people why. Having Alzheimers is nothing to be ashamed of. I’m now looking forward to my 85th and planning another party for that, perhaps with the new family I never knew I had. Why not?
As told to David Cox
If you or a loved one have been diagnosed with cognitive impairment or dementia, you can register here to find out about upcoming clinical trials, for which you might be eligible.
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